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When Alyssa went to her OBGYN to ask about getting pregnant, she was told to take prenatal vitamins, track ovulation, and have sex. The OB told her everything was fine. This didn’t sit right with Alyssa, who had been trying to conceive for a few months with no positive pregnancy tests. She kept trying, but when nothing happened, she decided to go back to the doctor and ask for more testing. She got blood taken for AMH and FSH tests. “I wasn’t told much, just that they were going to run a hormone panel,” Alyssa said.
Again, the doctors told her that everything looked great. And once again, Alyssa knew something was off. “I just didn’t feel good about it,” Alyssa said. “I could feel that I was ovulating every month, the sticks were telling me I was ovulating every month, my hormone levels were telling me everything was lining up. There was no reason to believe I had an egg quality issue, or anything like that. So I decided to take matters into my own hands.” Alyssa felt that her general OB just wasn’t taking her fertility concerns seriously. The OB kept telling her to keep trying, despite the fact that Alyssa feeling like something was wrong. She asked her OB to refer who to a specialist, but this wasn’t helpful. “She kind of giggled a bit, and then told me she’d put me on the waiting list, which she said may take three months,” Alyssa said. So decided to take charge and look up what she had to do to see a specialist.
Alyssa booked a consultation with a reproductive endocrinologist on her own. She researched through Google and asked friends for advice, which helped her figure out who she should see. Her experience with the RE was different than that with her OB right away. “I booked an appointment, walked in, and within 5 minutes he was able to tell me why I hadn’t been getting pregnant,” she said. As it turns out, a previous surgery that Alyssa had gotten for a rupture had caused a tubal problem. One of her tubes had been closed. On the surgery overview report, it said that the tubes had been salvaged. However, in the more detailed version of the surgery report, it explained that one of Alyssa’s tubes was connected to another hidden uterus. Because of this, her tubes were not accessible. The RE read through the whole surgery report before Alyssa’s appointment, and knew this was the reason why she hadn’t been getting pregnant.
“I felt so betrayed by my OB,” said Alyssa, describing her experience discovering this news. She was shocked that her general OB had not taken the time to really understand her medical history in order to find out why she hadn’t been getting pregnant. “The only person who actually took the time to read the full report was my RE,” she said. The RE told her that IVF was the only way she could conceive. Alyssa and her husband decided to move forward with an IVF cycle. They got 24 eggs which all fertilized; 17 became embryos and were sent off for PGS testing. 12 embryos came back normal. The process was new to Alyssa and she only had a basic knowledge of what all of this meant. “I think I could have spent a ton of time googling things, but I decided not to,” she said, explaining that she decided it was better to just trust her RE. That being said, she was excited about the outcome or her first cycle. “I thought we were in the clear,” she said. “Our embryos were PGS tested, the outcome was great, my body looked ready. I was going to be high risk because I have two uteri, but the doctors told me that they’d monitor me and that everything should be fine.”
They transferred one embryo and it stuck. “I was so naive and thought, this is it. We’re pregnant, it worked,” Alyssa said. When the doctors began running routine testing for Alyssa and her baby, results kept coming back that the baby had down syndrome. After looking into this further, doctors realized that this wasn’t the case, but that Alyssa had placenta issues. Her ultrasounds were coming back abnormal, and the baby was not growing as expected. At this point it was still too early on in the pregnancy to really tell what was going on. Alyssa and her husband had to wait until 20 weeks to get any real answers. “After IVF it feels like you’ve worked so hard for this embryo that’s inside of you. The thought of anything happening to it is crippling,” Alyssa said. It was difficult not knowing what was going on with the pregnancy.
Finally, at 20 weeks doctors were able to run a test on the baby’s genes and chromosomes. They found a defect on the X chromosome. This explained everything that had been coming up as abnormal along the way. Alyssa and her husband learned about the risks involved with this kind of defect, and the chances of life for the baby. Given this information, they opted to give birth at 23 weeks. They lost the baby at 23 weeks and four days. This was emotionally devastating for Alyssa, and hard on her body as well. “I’m still in healing, doing surgery and running tests. My hormones have changed, my estrogen is off. It’s not a simple road,” she said.
After they lost the baby, doctors ran PGT-M testing on the other embryos in order to test for the same gene. They traced the gene back to five of the embryos, meaning that they have six healthy embryos left. Alyssa moved forward with another transfer in June. Her doctor warned that this may be too soon after the loss, which was in March of the same year. “Looking back, I can’t believe I did that,” Alyssa said, reflecting on how soon she tried another transfer. This cycle failed, likely because her body had not fully healed from the loss. Alyssa plans to try again but to wait longer this time around. She and her husband are thinking about doing their next transfer in late October or November of 2020.
Alyssa didn’t share her story at first, but when she began her retrievals, she tried posting in various Facebook groups. She didn’t like the responses she got- women telling her she should be grateful she wasn’t worse off, or acting hostile if Alyssa asked a question. This experience, along with newfound knowledge of how diet and lifestyle can impact IVF outcomes, inspired Alyssa to start her own Facebook group called “Healthy IVF Journey”. This became a space where women shared knowledge, and learned from others. It was a helpful platform for Alyssa. Next, she started an Instagram, and got pregnant soon after. “At first I felt bad about being in the space. I thought, who am I to come in, do IVF, get 12 embryos, get pregnant right away and then speak about fertility?” She stayed quiet for a while, waiting to see what would happen, and trying to navigate her place in the fertility space. When things in her pregnancy began to get complicated, and later, when she experienced a loss, she leaned on the community who really understood what she was going through. “I started connecting with people who had experienced IVF losses, and endured the hardships of IVF. I made these amazing friendships,” she said. She now shares as much as she can on Instagram, hoping to help people feel less alone, or inspire them to open up. “It’s great to have a space where everyone understands what you’re going through. It’s been really healing for me, and helpful as I navigate what’s next for my fertility,” Alyssa said.
Looking back on her experience with fertility so far, what stands out to Alyssa is the lack of information given to patients, and the importance of support through the journey. She believes that women and couples facing obstacles in conception need to be empowered with a better understanding of what everything means. “What does poor equality mean, what does DOR mean, low AMH, high FSH. What do all of these acronyms mean and why are they important? People need to be told these things when they begin seeing their specialist,” Alyssa said. “Everything is so brushed off. We’re told, ‘keep trying for a year, let me know if it doesn’t work’”. The reality is, everyone’s body functions differently and women deserve a more in depth understanding of their health and fertility. For some, it’s not enough to ‘just keep trying’- they need more support, and they need more answers. Alyssa feels that the more people communicate and share about fertility, the more in control women will feel. Learning from others who have been through similar experiences can help women know what to ask their doctor, and allow them to better understand their health. Alyssa believes that the fertility community can provide the emotional, personal support that is necessary through the fertility journey.
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